Artist Anjie Mailey shares her experience with the misunderstood chronic condition that causes pain to millions of people.
Fibromyalgia is a long-term chronic condition that causes pain to millions of people but is little known and little researched, says Jo Waters
Kirsty Young’s decision to take a break from Desert Island records last summer due to her struggle with fibromyalgia put the poorly understood condition at the center of attention.
But the presenter of BBC Radio is not the only famous name that fights against this disease in the long term.
Lady Gaga is another victim of high profile fibro. The singer was so affected that she had to cancel the last 10 dates of a world tour last year.
And actor Morgan Freeman has also talked about how to deal with the whole body’s pain of the condition.
A recent report from Parliament estimates that almost two million Britons have fibromyalgia, which is more likely to occur between 20 and 50 years. And women are seven times more likely to be affected than men.
Symptoms include increased sensitivity to pain, fatigue, muscle stiffness, difficulty sleeping, cognitive and memory problems, headaches and irritable bowel syndrome.
Kirsty Young decided to take a break from Desert Island records last summer due to her struggle with fibromyalgia.
Then there are pins and needles, a burning sensation in the skin, cramps in the legs, restless legs, tingling and depression. Pain can be experienced anywhere or in specific areas, and this can change.
‘The exercise made me feel good again’
Anjie Mailey, 49, an artist and special needs worker in East London, has had fibromyalgia for 15 years:
My symptoms started with unusual aches and pains; If someone touched me lightly, I felt as if they had hit me.
I was exhausted, as if my muscles had no energy supply and my brain slowed down. I would forget things all the time. Later I learned that this was called fibro fog.
It took him about three years to get a diagnosis. I went to the family doctor and I had tests to rule out diseases such as lupus and multiple sclerosis, but all were negative. Finally I was referred to a rheumatologist who diagnosed fibromyalgia.
My breakthrough came when I was recommended a self-management course in fibromyalgia at the Great Ormond Street Hospital in London, where we received group therapy, gentle exercise classes and were taught how to manage the symptoms.
The exercise was really the last thing I felt, since I was overweight, I was not in shape and with so much pain I was using two canes, but I decided to enter a gym.
It hurt at first, but I took painkillers and went ahead. It hurt all the next day, but little by little I increased my muscular strength and my resistance, and my muscles hurt less.
Soon I was fit enough to do karate and women’s boxing. I also attended a slimming club and I lost seven stones.
They told me that you have 20 tablespoons of energy to use in a day and each activity will cost you one of them.
The challenge is to plan how you will spend that energy. My pain is still there, but I have learned to handle it and take control now.
What causes it?
The condition is now recognized as a malfunction of the pain threshold system. It is thought that a flaw develops in the way pain signals are processed, although it is not yet clear what triggers this.
Studies using brain imaging have found increasing evidence suggesting central nervous system involvement.
“Patients become too sensitive to external stimuli and their pain threshold drops immediately, so the fact that they touch them lightly can be very painful,” explains Dr. Rod Hughes, rheumatologist specialist at St. Peter’s Hospital. in Chertsey, Surrey.
“Fibromyalgia is often seen as the result of some type of stressful event, such as surgery, an accident or a large emotional trauma, such as divorce.
“Often, there has been a critical point of stress and patients may have a history of migraines or IBS-like symptoms.”
Difficulty in the diagnosis.
As so many symptoms overlap with other conditions, and there are no definitive diagnostic tests, it may take time, several years, in some cases, to obtain a diagnosis.
Hazel Borland of Fibromyalgia Action UK of the United Kingdom, the largest charity organization of fibro in the United Kingdom, says that if patients can see a friendly doctor or not, it is due to their zip code.
“Many patients tell us that their symptoms disappear or that they are told they are depressed,” she says.
“Although that may be true, they are often depressed due to their fibro symptoms.
“Patients also report that they have moved from one pillar to another between doctors and specialists, and there are only a handful of clinics specializing in fibrosis.”
She adds: “The impact of fibromyalgia is underestimated. If people do not feel supported, this can lead to depression and isolation, and even suicide. “
Hazel recommends seeking a second opinion or asking for a referral to a center specialized in fibromyalgia …